Well, we all need a reason to wake up. For me, it just took 11,000 volts.
Svima nam je potreban razlog da se probudimo. Meni je trebalo samo 11 000 volti.
I know you're too polite to ask, so I will tell you.
Znam da ste previše kulturni da pitate, pa ću vam reći.
One night, sophomore year of college, just back from Thanksgiving holiday, a few of my friends and I were horsing around, and we decided to climb atop a parked commuter train. It was just sitting there, with the wires that run overhead. Somehow, that seemed like a great idea at the time. We'd certainly done stupider things. I scurried up the ladder on the back, and when I stood up, the electrical current entered my arm, blew down and out my feet, and that was that. Would you believe that watch still works? Takes a licking!
Jedne noći, na drugoj godini fakulteta, tek sam se vratio sa proslave Dana zahvalnosti, glupirao sam se sa nekoliko prijatelja i odlučili smo da se popnemo na vagon putničkog voza. Samo je stajao, sa žicama koje su išle iznad njega. To se nekako činilo kao sjajna ideja u tom trenutku. Svakako smo radili gluplje stvari. Namestio sam merdevine pozadi i kada sam ustao, električna struja pogodila je moju ruku, prošla kroz mene preko stopala i to je bilo to. Da li verujete da sat još uvek radi? Kao podmazan!
(Laughter)
(Smeh)
My father wears it now in solidarity.
Moj otac ga sada nosi iz solidarnosti.
That night began my formal relationship with death -- my death -- and it also began my long run as a patient. It's a good word. It means one who suffers. So I guess we're all patients.
Te noći počela je moja formalna veza sa smrću - mojom smrću - i takođe je počela moja dugotrajna uloga pacijenta. To je dobra reč. Označava onog koji pati. Pretpostavljam da smo svi pacijenti.
Now, the American health care system has more than its fair share of dysfunction -- to match its brilliance, to be sure. I'm a physician now, a hospice and palliative medicine doc, so I've seen care from both sides. And believe me: almost everyone who goes into healthcare really means well -- I mean, truly. But we who work in it are also unwitting agents for a system that too often does not serve.
Američki sistem zdravstva ima prilično nefunkcionalosti - jednako koliko i briljantnosti. Sada sam lekar, u domu za nemoćne i palijativno zbrinjavanje, tako da sam video negu sa obe strane. Verujte mi, skoro svako ko stupi u zdravstvo zaista ima dobre namere - zaista. Ali mi koji tu radimo takođe smo nesvesni učesnici sistema koji često ne funkcioniše.
Why? Well, there's actually a pretty easy answer to that question, and it explains a lot: because healthcare was designed with diseases, not people, at its center. Which is to say, of course, it was badly designed. And nowhere are the effects of bad design more heartbreaking or the opportunity for good design more compelling than at the end of life, where things are so distilled and concentrated. There are no do-overs.
Zašto? Odgovor na to pitanje zapravo je prilično jednostavan i objašnjava dosta toga: zato što je zdravstvo osmišljeno tako da su u centru bolesti, a ne ljudi. Što bi reklo, osmišljeno je loše. Efekti ovog lošeg dizajna nisu nigde više srceparajući i prilika za dobar dizajn ubedljivija nego na kraju života, gde su stvari toliko filtrirane i koncentrisane. Nema drugih prilika.
My purpose today is to reach out across disciplines and invite design thinking into this big conversation. That is, to bring intention and creativity to the experience of dying. We have a monumental opportunity in front of us, before one of the few universal issues as individuals as well as a civil society: to rethink and redesign how it is we die.
Moja svrha danas je da krenem preko više disciplina i unesem razmišljanje o dizajnu u ovaj veliki razgovor. To jest, da uvedem nameru i kreativnost u iskustvo umiranja. Ispred sebe imamo ogromnu priliku, jedno od nekoliko univerzalnih pitanja za nas kao pojedince i građansko društvo: da ponovo osmislimo kako umiremo.
So let's begin at the end. For most people, the scariest thing about death isn't being dead, it's dying, suffering. It's a key distinction. To get underneath this, it can be very helpful to tease out suffering which is necessary as it is, from suffering we can change. The former is a natural, essential part of life, part of the deal, and to this we are called to make space, adjust, grow. It can be really good to realize forces larger than ourselves. They bring proportionality, like a cosmic right-sizing. After my limbs were gone, that loss, for example, became fact, fixed -- necessarily part of my life, and I learned that I could no more reject this fact than reject myself. It took me a while, but I learned it eventually. Now, another great thing about necessary suffering is that it is the very thing that unites caregiver and care receiver -- human beings. This, we are finally realizing, is where healing happens. Yes, compassion -- literally, as we learned yesterday -- suffering together.
Počnimo od kraja. Za većinu ljudi, najstrašnija stvar u vezi sa smrću nije biti mrtav. U pitanju je umiranje, patnja. To je ključna razlika. Kako bismo razlučili ovo, može biti korisno da razdvojimo patnju koja je sama po sebi neophodna sa patnjom koju možemo izmeniti. Prva je prirodan, ključni deo života, deo celog paketa i ovde smo pozvani da napravimo mesta, prilagodimo se, rastemo. Zaista može biti dobro da shvatimo da postoje sile veće od nas samih. One donose proporciju, poput svemirskog prilagođavanja veličine. Nakon što su otišli moji udovi - na primer, taj gubitak, postao je fiksirana činjenica - neophodni deo mog života, i naučio sam da ne mogu da odbijam ovu činjenicu koliko ni da odbijam sebe. Bilo mi je potrebno dosta vremena, ali na kraju sam to naučio. Još jedna sjajna stvar u vezi sa neophodnom patnjom je da je to baš ona stvar koja povezuje onog koji pruža i onog koji prima negu - ljudska bića. Konačno shvatamo da se ovde dešava lečenje. Kako smo saznali juče, bukvalno je saosećanje to - zajednička patnja.
Now, on the systems side, on the other hand, so much of the suffering is unnecessary, invented. It serves no good purpose. But the good news is, since this brand of suffering is made up, well, we can change it. How we die is indeed something we can affect. Making the system sensitive to this fundamental distinction between necessary and unnecessary suffering gives us our first of three design cues for the day. After all, our role as caregivers, as people who care, is to relieve suffering -- not add to the pile.
U drugu ruku, sa strane sistema, dosta patnje je nepotrebno i izmišljeno. Nema nikakvu svrhu. Ali dobra vest je to da pošto je ova patnja izmišljena, možemo je promeniti. Zaista možemo uticati na to kako umiremo. Možemo napraviti sistem da je osetljiv na ovu ključnu razliku između potrebne i nepotrebne patnje i to nam daje prvi od tri zadatka za dizajn danas. Naša uloga kao nekog ko pruža negu ipak je da olakšamo patnju, a ne da je gomilamo.
True to the tenets of palliative care, I function as something of a reflective advocate, as much as prescribing physician. Quick aside: palliative care -- a very important field but poorly understood -- while it includes, it is not limited to end of life care. It is not limited to hospice. It's simply about comfort and living well at any stage. So please know that you don't have to be dying anytime soon to benefit from palliative care.
Za one kojima je potrebna palijativna nega, ja sam nešto poput zastupnika za prisećanje, isto koliko i lekar. Usput, palijativna nega, veoma bitno polje ali često slabo shvaćeno, iako obuhvata brigu pri kraju života, nije ograničena samo na to. Nije ograničena samo na staračke domove. Radi se o komforu i dobrom životu u bilo kom dobu života. Molim vas da imate na umu da ne morate da umrete uskoro kako biste imali prednosti od palijativne nege.
Now, let me introduce you to Frank. Sort of makes this point. I've been seeing Frank now for years. He's living with advancing prostate cancer on top of long-standing HIV. We work on his bone pain and his fatigue, but most of the time we spend thinking out loud together about his life -- really, about our lives. In this way, Frank grieves. In this way, he keeps up with his losses as they roll in, so that he's ready to take in the next moment. Loss is one thing, but regret, quite another. Frank has always been an adventurer -- he looks like something out of a Norman Rockwell painting -- and no fan of regret. So it wasn't surprising when he came into clinic one day, saying he wanted to raft down the Colorado River. Was this a good idea? With all the risks to his safety and his health, some would say no. Many did, but he went for it, while he still could. It was a glorious, marvelous trip: freezing water, blistering dry heat, scorpions, snakes, wildlife howling off the flaming walls of the Grand Canyon -- all the glorious side of the world beyond our control. Frank's decision, while maybe dramatic, is exactly the kind so many of us would make, if we only had the support to figure out what is best for ourselves over time.
Upoznaću vam s Frenkom, koji ilustruje ovo o čemu pričam. Frenka viđam već godinama. On živi sa uznapredovalim rakom prostate pored dugotrajnog HIV-a. Radimo na njegovom bolu u kostima i izmorenosti, ali većinu vremena provodimo misleći naglas o njegovom životu, zapravo o našim životima. Na ovaj način Frenk boluje. Na ovaj način, drži korak sa svojim gubicima kako nastaju, tako da je spreman da upije sledeći trenutak. Gubitak je jedno, dok je žaljenje nešto sasvim drugo. Frenk je uvek bio avanturista - izgleda kao da je izašao iz slike Normana Rokvela - i ne voli žaljenje. Stoga nije iznenadilo kad je jednog dana došao na kliniku i izjavio da želi da ide splavom niz reku Kolorado. Da li je ovo bila dobra ideja? Sa svim rizicima po njegovo zdravlje i bezbednost, neki bi rekli da nije. Mnogi su to rekli, ali je on to uradio, dok je još mogao. Bilo je to spektakularno, sjajno putovanje: ledena voda, žestoka suva vrućina, škorpije, zmije, divlje zveri koje zavijaju sa vrelih zidova Velikog kanjona - sve sjajne strane sveta koje su van naše kontrole. Iako je dramatična, Frenkova odluka je upravo onakva kakvu bi većina nas donela, kada bimso samo imali podršku da shvatimo šta je tokom vremena za nas najbolje.
So much of what we're talking about today is a shift in perspective. After my accident, when I went back to college, I changed my major to art history. Studying visual art, I figured I'd learn something about how to see -- a really potent lesson for a kid who couldn't change so much of what he was seeing. Perspective, that kind of alchemy we humans get to play with, turning anguish into a flower.
Dosta toga o čemu danas pričamo znači promenu u perspektivi. Nakon moje nesreće, kada sam se vratio na fakultet, promenio sam smer na istoriju umetnosti. Proučavajući vizuelnu umetnost, mislio sam da ću naučiti nešto o tome kako da gledam, zaista bitna lekcija za dečka koji nije mogao da promeni većinu toga što je gledao. Perspektiva, ta vrsta alhemije sa kojom se igramo, pretvaranje bola u cvet.
Flash forward: now I work at an amazing place in San Francisco called the Zen Hospice Project, where we have a little ritual that helps with this shift in perspective. When one of our residents dies, the mortuary men come, and as we're wheeling the body out through the garden, heading for the gate, we pause. Anyone who wants -- fellow residents, family, nurses, volunteers, the hearse drivers too, now -- shares a story or a song or silence, as we sprinkle the body with flower petals. It takes a few minutes; it's a sweet, simple parting image to usher in grief with warmth, rather than repugnance. Contrast that with the typical experience in the hospital setting, much like this -- floodlit room lined with tubes and beeping machines and blinking lights that don't stop even when the patient's life has. Cleaning crew swoops in, the body's whisked away, and it all feels as though that person had never really existed. Well-intended, of course, in the name of sterility, but hospitals tend to assault our senses, and the most we might hope for within those walls is numbness -- anesthetic, literally the opposite of aesthetic. I revere hospitals for what they can do; I am alive because of them. But we ask too much of our hospitals. They are places for acute trauma and treatable illness. They are no place to live and die; that's not what they were designed for.
Prebacimo se unapred: sada radim na neverovatnom mestu u San Francisku koje se zove Dom za stare - projekat Zen, gde imamo mali ritual koji pomaže sa ovom promenom u perspektivi. Kad god neki od naših stanovnika premine, dolaze ljudi iz mrtvačnice, i dok guramo telo na kolicima kroz baštu ka kapiji, zaustavimo se. Svako ko želi - drugi stanovnici, porodica, medicinske sestre, volonteri, vozači pogrebnog vozila - podeli priču, pesmu ili ćuti dok telo posipamo laticama cveća. To traje nekoliko minuta, to je simpatična, jednostavna slika opraštanja da se bol uvede s toplinom umesto odbijanjem. Uporedite to sa tipičnim iskustvom u bolničkom okruženju, slično ovom - svetlost reflektora u sobi prepunoj cevčica i mašina koje pište i trepćućih svetala koja se ne gase čak ni kada se ugasi život pacijenta. Dolazi ekipa za čišćenje, telo se na brzinu odnosi i imate osećaj kao da ta osoba nikada zapravo nije ni postojala. Namera je dobra, naravno, u ime sterilnosti, ali bolnice obično napadaju naša čula i najviše čemu se možemo nadati unutar tih zidova je obamrlost, anestetika, bukvalna suprotnost estetici. Slavim bolnice zbog onoga što one mogu - zahvaljujući njima sam živ. Ali od naših bolnica tražimo previše. To su mesta za akutne traume i izlečive bolesti. Nisu mesta za živeti i umreti, nisu za to smišljena.
Now mind you -- I am not giving up on the notion that our institutions can become more humane. Beauty can be found anywhere. I spent a few months in a burn unit at St. Barnabas Hospital in Livingston, New Jersey, where I got really great care at every turn, including good palliative care for my pain. And one night, it began to snow outside. I remember my nurses complaining about driving through it. And there was no window in my room, but it was great to just imagine it coming down all sticky. Next day, one of my nurses smuggled in a snowball for me. She brought it in to the unit. I cannot tell you the rapture I felt holding that in my hand, and the coldness dripping onto my burning skin; the miracle of it all, the fascination as I watched it melt and turn into water. In that moment, just being any part of this planet in this universe mattered more to me than whether I lived or died. That little snowball packed all the inspiration I needed to both try to live and be OK if I did not. In a hospital, that's a stolen moment.
Ipak, ne odustajem od toga da naše institucije mogu postati humanije. Lepota se može pronaći svuda. Proveo sam nekoliko meseci u odeljenju za opekotine u bolnici Sv. Barnabas u Livingstonu u Nju Džerziju gde su se sjajno brinuli o meni na svakom koraku, uključujući i dobru palijativnu negu za moj bol. Jedne noći, napolju je počeo da pada sneg. Sećam se da su se medicinske sestre žalile što su morale da voze kroz njega. U mojoj sobi nije bilo prozora, ali bilo je sjajno samo zamišljati ga kako pada, sav lepljiv. Sutradan je jedna od sestara za mene prokrijumčarila grudvu. Donela ju je na odeljenje. Ne mogu da vam objasnim ushićenje dok sam je držao u ruci i hladnoću koja je kapala na moju uzavrelu kožu, čudo svega toga, oduševljenje dok sam gledao kako se topi i pretvara u vodu. Tog trenutka, samo to da budem bilo koji deo planete u ovom univerzumu bilo mi je bitnije od toga da li sam živ ili mrtav. Ta grudvica sadržala je u sebi svu inspiraciju koja mi je bila potrebna i da pokušam da živim i da se pomirim sa time ako ne mogu. To je ukraden trenutak u bolnici.
In my work over the years, I've known many people who were ready to go, ready to die. Not because they had found some final peace or transcendence, but because they were so repulsed by what their lives had become -- in a word, cut off, or ugly. There are already record numbers of us living with chronic and terminal illness, and into ever older age. And we are nowhere near ready or prepared for this silver tsunami. We need an infrastructure dynamic enough to handle these seismic shifts in our population. Now is the time to create something new, something vital. I know we can because we have to. The alternative is just unacceptable. And the key ingredients are known: policy, education and training, systems, bricks and mortar. We have tons of input for designers of all stripes to work with.
Tokom godina svog rada, poznavao sam mnoge ljude koji su bili spremni da idu, spremni da umru. Ne zato što su pronašli neki konačni mir ili transcendenciju, već zato što su bili toliko zgađeni time šta je njihov život postao, jednom rečju odsečen ili ružan. Već su rekordni brojevi nas koji živimo sa hroničnom ili smrtnom bolešću do sve starijeg doba. I nimalo nismo spremni ili pripremljeni za ovaj srebrni cunami. Potrebna nam je dovoljno dinamična infrastruktura koja može da se izbori sa ovim seizmičkim kretanjima populacije. Sada je vreme da se stvori nešto novo, nešto vitalno. Znam da možemo jer moramo. Alternativa je prosto neprihvatljiva. Ključni sastojci su poznati: princip rada, obrazovanje i obuka, sistemi, cigla i malter. Imamo dosta informacija za sve vrste dizajnera o tome šta da rade.
We know, for example, from research what's most important to people who are closer to death: comfort; feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality.
Iz istraživanja na primer znamo šta je najbitnije ljudima koji su blizu smrti: komfor, osećaj neopterećnosti i da nisu teret svojim voljenima, egzistancijalni mir i osećaj čuđenja i duhovnosti.
Over Zen Hospice's nearly 30 years, we've learned much more from our residents in subtle detail. Little things aren't so little. Take Janette. She finds it harder to breathe one day to the next due to ALS. Well, guess what? She wants to start smoking again -- and French cigarettes, if you please. Not out of some self-destructive bent, but to feel her lungs filled while she has them. Priorities change. Or Kate -- she just wants to know her dog Austin is lying at the foot of her bed, his cold muzzle against her dry skin, instead of more chemotherapy coursing through her veins -- she's done that. Sensuous, aesthetic gratification, where in a moment, in an instant, we are rewarded for just being. So much of it comes down to loving our time by way of the senses, by way of the body -- the very thing doing the living and the dying.
Tokom skoro 30 godina Doma za stare - projekta Zen naučili smo dosta toga od naših stanovnika iz suptilnih detalja. Male stvari nisu tako male. Pogledajmo Džanet. Jednog dana joj je teže da diše zbog Lu Gerigove bolesti. Pogodite šta? Želi da ponovo počne da puši, francuske cigarete, ako može. Ne iz nekog samouništilačkog hira, već da oseti ispunjena pluća dok ih još uvek ima. Prioriteti se menjaju. Ili Kejt - ona samo želi da zna da njen pas Ostin leži u dnu njenog kreveta, njegova hladna njuška naspram njene suve kože umesto još hemoterapije koja bi joj tekla venama - s tim je završila. Čulno, estetsko zadovoljenje, gde u trenutku, momentalno budemo nagrađeni samo zato što postojimo. Toliko toga se svodi na obožavanje našeg vremena samo kroz čula, kroz telo - baš onu stvar koja živi i koja umire.
Probably the most poignant room in the Zen Hospice guest house is our kitchen, which is a little strange when you realize that so many of our residents can eat very little, if anything at all. But we realize we are providing sustenance on several levels: smell, a symbolic plane. Seriously, with all the heavy-duty stuff happening under our roof, one of the most tried and true interventions we know of, is to bake cookies. As long as we have our senses -- even just one -- we have at least the possibility of accessing what makes us feel human, connected. Imagine the ripples of this notion for the millions of people living and dying with dementia. Primal sensorial delights that say the things we don't have words for, impulses that make us stay present -- no need for a past or a future.
Verovatno najdirljivija prostorija u gostinskoj kući našeg doma je naša kuhinja, što je pomalo čudno kada shvatite da većina naših stanovnika može da pojede veoma malo, skoro ništa. Ali shvatamo da pružamo potporu na više nivoa: miris, simbolički nivo. Zaista, uz sve ozbiljne stvari koje se dešavaju pod našim krovom, jedna od najboljih i isprobanih intervencija za koju znamo je pečenje kolača. Dok god imamo naša čula - čak i samo jedno - makar imamo mogućnost pristupa onome što nas čini ljudima, povezanima. Zamislite efekte ove ideje za milione ljudi koji žive i umiru sa demencijom. Iskonski čulni užici koji govore stvari za koje nemamo reči, impulsi od kojih ostajemo prisutni - nema potrebe za prošlošću ili budućnošću.
So, if teasing unnecessary suffering out of the system was our first design cue, then tending to dignity by way of the senses, by way of the body -- the aesthetic realm -- is design cue number two. Now this gets us quickly to the third and final bit for today; namely, we need to lift our sights, to set our sights on well-being, so that life and health and healthcare can become about making life more wonderful, rather than just less horrible. Beneficence.
Ako je prva naznaka za dizajn bila izvlačenje nepotrebne patnje iz sistema, onda je druga naznaka za dizajn pažnja o dostojanstvu kroz čula, kroz telo i estetski realm. Ovo nas vodi ka trećoj i poslednjoj stvari za danas. Naime, treba da prebacimo svoj fokus na dobrostanje, tako da život i zdravlje i nega mogu da imaju veze sa tim da život bude lepši, umesto da bude manje užasan. Milosrđe.
Here, this gets right at the distinction between a disease-centered and a patient- or human-centered model of care, and here is where caring becomes a creative, generative, even playful act. "Play" may sound like a funny word here. But it is also one of our highest forms of adaptation. Consider every major compulsory effort it takes to be human. The need for food has birthed cuisine. The need for shelter has given rise to architecture. The need for cover, fashion. And for being subjected to the clock, well, we invented music. So, since dying is a necessary part of life, what might we create with this fact? By "play" I am in no way suggesting we take a light approach to dying or that we mandate any particular way of dying. There are mountains of sorrow that cannot move, and one way or another, we will all kneel there. Rather, I am asking that we make space -- physical, psychic room, to allow life to play itself all the way out -- so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end. We can't solve for death. I know some of you are working on this.
Ovo je ono što pogađa razliku između modela brige koji se okreće oko bolesti i onog koji se okreće oko pacijenta, i ovde nega postaje čin kreativnosti, stvaranja čak i igre. "Igra" možda ovde zvuči čudno. Ali to je jedan od naših najviših oblika adaptacije. Razmislite o svakom većem obaveznom naporu koji je potreban da budete čovek. Potreba za hranom stvorila je kuhinju. Potreba za skloništem dala je zamah arhitekturi. Potreba za odeždom - modu. A što se tiče prolaska vremena, pa, izmislili smo muziku. Pošto je smrt obavezan deo života, šta da uradimo s ovom činjenicom? Pod "igrom" ne podrazumevam da zauzmemo lak pristup umiranju ili da zahtevamo neki naročit način da se umre. Postoje planine bola koje ne mogu da se izmeste, i na jedan ili drugi način, svi ćemo tamo pokleknuti. Umesto toga tražim da stvorimo prostora - fizičkog, mentalnog prostora, da dozvolimo životu da se potpuno odigra, umesto da se samo sklonimo sa puta, starenje i smrt mogu da postanu proces nalik krešendu sve do kraja. Ne možemo da rešimo smrt. Znam da neki od vas rade na ovome.
(Laughter)
(Smeh)
Meanwhile, we can --
U međuvremenu, možemo -
(Laughter)
(Smeh)
We can design towards it. Parts of me died early on, and that's something we can all say one way or another. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left, like that snowball lasting for a perfect moment, all the while melting away. If we love such moments ferociously, then maybe we can learn to live well -- not in spite of death, but because of it. Let death be what takes us, not lack of imagination.
Možemo da dizajniramo za smrt. Delovi mene umrli su rano i to je nešto što svi možemo reći na ovaj ili onaj način. Ponovo sam osmislio svoj život oko ove činjenice i mogu da vam kažem da je bilo oslobođenje da shvatim da uvek možete pronaći šok lepote ili značenje u životu koji vam je preostao, nalik na grudvu koja je trajala savršen trenutak dok se topila. Ukoliko žestoko volimo te trenutke, možda možemo naučiti da živimo dobro - ne uprkos smrti, već zbog nje. Neka smrt bude ono što nas odnosi, a ne nedostatak mašte.
Thank you.
Hvala vam.
(Applause)
(Aplauz)